It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Wednesday, 3 February 2010

Rastelli vs Nikaidoh

Have been to see Mr Hasan this morning regarding his op. He said they hope to do the rastelli but it could depend upon a few things and until they open him op:( they wont know - but they will either do that or the nikaidoh. They did an echo to check him over.

They are also doing it now before he starts school as apparantly they are starting to do them sooner so he can get a good few years in school b4 his next op. We are looking at 2-3 more operations after this to get him to his 20's after that they dont know as they dont have any figures for people beyond 30-40 year old. But the likelyhood is that he will need more to correct leaks etc.

Its an all day operation and he has done 10 rastelli's in his career - he said it is a very rare op. but that all patients that have had the op are still with us!

there is a 10-15% risk - (a moderate risk he said) and 4-5 days ICU and 10-15 days on the ward.

Thats a hell of alot longer than i thought it was:confused: We need to see Dr Spencer (the respiritory doc that discharged us) to get his chest sorted as he is really wheezy.

He took my mobile number and I have to wait for a phone call. So now Im waiting and I think its starting to sink in.... x


  1. if it would be helpful, my son had the Nikaidoh and is doing quite well. you can check out his info at page name AdamMatthew. best wishes with your son! -Diane from Kansas

  2. thank you diane, are you on facebook ??

  3. Hi Sam, got to your blog through the CHD UK website. Fingers crossed for Ethan's op. Mr Hasan is a genius so he's in great hands. - Best wishes, Andy

  4. I will be here to offer support any way I can. xoxo Kristine

  5. Just want to let you know I'm thinking of you and will have you in my prayers. Hope he gets better soon from all the wheeziness so you have one less thing to worry about before surgery. I'm over here trying my best to keep Alexa healthy the next two weeks. What have they told you about the surgeries, why to they prefer the Rastelli and what will determine which they choose?

    Heart hugs,


  6. Thank you andy, christine & michelle.
    They wont know which op to do until they open him up. Depends on the state of the coronary arteries apparantly and they are unable to tell what they are like until he is open. :(

    Getting nervious waiting for the call.

  7. Hi! My name is Stefenie and my 3 year old son, Logan, was born with five complex heart defects. D-TGA, DORV, VSD, Pulmonary Stenosis and a Right Aortic Arch. He had the Rastelli surgery at ten months old and just recently had another surgery in January to replace his conduit.

    I found your site while doing a search for other Rastelli patient blogs.

    Our blog can be found at


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